Monday, March 12, 2012

Washington D.See

I didn't expect all the walking (even though I'd been warned).
I didn't expect so few protestors.
I didn't expect the stares. Or all of the smiles.
I didn't expect to like it.

I expected it to be harder. Emotionally.
I expected Ruby to have trouble.
I expected her feet to hurt, her stomach to growl, her angst to roar & her frailty to peer out.
I expected to cry much, much more.

Being in D.C. advocating for Fragile X research and for bills that would support people with special needs of all ages did not deliver the expected gifts or take its expected tolls.

Being in D.C. was not the "Great Provider of Limitless Empowerment" I thought it would be. It was quieter, more exacting and serene.

D.C. gave me fathers of Fragile X children. My new favorite segment of the population. All of the love, none of the machismo; these are good, good men. It gave me stories of Fragile X girls and their delicious quirks and heartbreaking fears; girls just like my PJ.

And it gave me a friend for my daughter, Ruby. A friend with long hair, plaid shirts, an iPhone loaded with drawing apps and Temple Run. A friend with a sweet smile and a high IQ. A friend with a younger brother who is deeply affected by Fragile X.

Watching them skip like little girls way far ahead of the group, way ahead of their mothers and into the almost darkness of the night of a new city towards their unpredictable futures was both bone-chilling and so, so comforting.

I looked at her mom and it was a moment of knowing that I don't remember ever having before. The hugs we shared when we said our goodbyes were deep, intimate things solidifying the friendship of those girls. Those young and powerful and so wildly vital girls.

Friday, March 2, 2012

Ruby: Mom, can I tell you something?
Me: Did you get your period?!?
Ruby: No.

Ruby: Something happened at school today.
Me: Did you get your period?!?
Ruby: No.

Ruby: I need to talk to you.
Me: Did you get your period?!?
Ruby: No.

Ruby: Mom, do you have time to take me to CVS?
Me: Did you get your period?!?
Ruby: No.

Ruby: I need to show you something.
Me: Did you get your period!?!
Ruby: NO!

If she never speaks to me again I will completely understand.